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Stories of NF: Emilia and Addison P.

By March 18, 2021December 4th, 2023NF1, Story of NF

In this family Addison, her sister Emilia, and I (Mom) all have NF1. Emilia saw genetics at 1 year old, for cafe au lait spots. She was just recently diagnosed now, at 4 years old. Addison was officially diagnosed with NF1 when she turned 3 years old.

Emilia is 4 going on 24. She’s a spit-fire and nothing stops her. Emilia is starting pre-k in September. She can count, write her name, and knows her ABCs. She is starting her third year of dance, this year it's tap, and she couldn't be more excited. She loves to cook, do hair and makeup, bake, and dance. Emilia wants to be a Baker, Hairstylist, and a NY Jets Cheerleader. We are just beginning on our NF journey, but are well aware of what we are facing. Our only main concern is she is small compared to other children her age, but it doesn't stop her.

Addison is 6 years old and lets nothing stop her. In the past 3 years, we have had bloodwork and MRIs. We meet regularly with an ophthalmologist, NF specialist, and endocrinologist. Addison started 1st grade this year. She can read some words and write. She loves math and science. She will also be starting her fifth year of dance and has joined a dance team. She has participated in tap, ballet, jazz, and hip-hop routines. Addison says when she gets older she wants to be a scientist.

We participate in fundraising events, Shine a Light NF Walks, and spread awareness to friends, families, and the community. We never give up and always keep trying and striving for the best.

-Submitted by Colleen, Emilia and Addison’s mom



You are my sunshine

Favorite song
Knockin' Boots by Luke Bryan

To fly



Don't let anyone ever dull your sparkle

Dream vacation

To fly